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Caring for a Spouse: He Accepts the Fact That He Has Alzheimer's
Went for a ride today and while we were riding we were talking about DH having Alz. yes he does except the fact that he has it. He was wondering how far along it has gotten and how much time he had left to be on this earth. Oh that was a very hard one to hear out of his mouth. But I told him no one knows how long we all will be here on this earth. Then that was it the subject was dropped. I also found out from his Dr. that the best time to get in the sun is the morning cause it seems to waken the A/D person up more and they can sleep better at night. I'm going to try this, but then again DH can sleep any time night or day. Just thought I'd let ya know how my day went. HUGS to all
Hi Nac! Sometimes they just have these moments that are so lucid and competent sounding it about breaks your heart. Steve asked me AGAIN if he could have sleep apnea and AD at the same time. YES dear. He told me not to worry so much about him. He said there's nothing we can do so don't wear yourself out worrying about me. I'm working on that one! Hugs to you my friend!
Marny, John tells me the same thing--not to worry about him so much and that he is fine. The lucid moments sometimes just "sneak up" on us don't they? He, too, accepts that he has Alz but I tell him that some people have it for years and years (which is true) and he is really not too bad yet and he worries that I work too hard taking care of him! Sometimes he can be so sweet and thoughtful and at other times very selfish--I know they are all that way!
Thanks Marny, Dh also walked up behind me today and asked me if we are married? I looked at him and asked him Do you think we are? He gave me that funny look and said " yes we are." It's always a work in progress. Hugs to all
Ah, yes, I could say all the same things. There are days DH is out of it and doesn't even know me and mutters out all his fears and confusion and desire to know where, who, how, what; but then he comes back and won't eat because there are other people who might need the food more or because he wants to share some from his plate to mine. So gentle and generous. Last night, after I turned out the light and rolled over, I got the best back massage! And I thot he was asleep. I live one day, one hour at a time, thanking God for what is.
I just got this from my WIL (wife in Law) and thought it fit all of us.
Sometimes we come to life's crossroads and we view what we think is the end,
But God has a much wider vision, and he knows it's only a bend.
The road will go on and get smoother and after we've stopped for a rest,
The path that lies hidden beyond us is often the path that is best.
So rest and relax and grow stronger, let go and let God share your load,
Have faith in a brighter tomorrow, you've just come to a bend in the road.
Helen Steiner Rice
Hugs to all ♥♥FM
Gooooooood flowermom. Those of you thathave the loving husbands enjoy them so much. My husband will hug me really close but never says anything about loving me but I will take the hugs and be content Before he got sick he showed me he loved me in everything he did so no complaints
Let me add one heartening note to moments of lucidity. Just before Christmas my husband triumphantly announced that "he had got it (AD) beat". I did not point out that this was medically impossible - I just agreed with him and enjoyed his joy. On reflection though, I understand what he meant, he no longer fears AD, he feels confident, secure and loved... that was my best Christmas present by far!
XXX K
What a wonderful gift, Kate!!! ♥ Great poem, too, F/M! How is everyone in your extended family doing? ♥ Nac - it seems like you handled your DH's question/concerns just about perfectly! You just never know what is going to be asked of you, though, do you......
Okay, forgive my "immaturity", please, tell me what AD stands for. I know most of the abbreviations "we" use, but that one I'm not sure of. Is it Alz-Dementia? or what? Thanks! My DH is still quite loving, and I appreciate it SO much. He can also be quite stubborn and critical. Gives great backrubs too!
Gatfly--My "extended family" are doing ok. We went shopping Tuesday, thought she, WIL, needed to get out as well as myself. My DH stayed with her husband while we were gone a whole 2 hours. DH called me 6 times and wanted to know "where are you"? Then he got very upset and his anger really came out!!! Needless to say we went home. When we arrived he was sitting there, calmly like nothing had happened and didn't even remember the whole incident. I felt so bad for Helen's husband, but he took it in stride. This was the first time I have been out without DH in a year!! My daugher has offered to come stay with DH, when she's not working, and said if he showed out she would put him in a corner--that I would love to see!!?? Helen and I have gotten even closer since Larrys' passing. We had Christmas together along with my daughter, grandson, granddaughter and 3 great-grand children. They had a ball opening presents--they are 4, 6, and 7 such a great age--endless energy!!!
DH has been very quiet the last 2 weeks, sleeps day and nite, no appetite and doesn't talk much. I don't know if this is his way of dealing with the loss of Larry or just the AD. If it continues I will call the Dr. on Tuesday. Anger issues are at the drop of a hat for no apparent reason. Oh well, maybe 2012 will be better???!!! Everyone have a Happy New Year. We will being having a "sit-in". Love and hugs to all.♥♥FM
F/M - so glad you had some time away and so glad that you and Helen have found a close connection. I wouldn't doubt but what your DH's behavior is in reaction to Larry's passing - like a young child, he isn't sure how to handle his grief, and acts out instead. Good luck!! 2012 will be a good year - I can feel it in my bones!! ♥ RA - you were very close - AD would be Alzheimer's Disease, I believe. ♥
Assisted Living: I'm Looking to Find a Dementia Unit for My Mom
I'm needing to look into finding a dementia unit for my mom. How do I not feel so guilty about looking. I hope I can keep her at her home for awhile still, but I need to be prepared. My father passed 15 years ago - I have hired help during all waking hours allowing mom to stay in her home, but the day will be coming that we need to move her. She will be SO mad!
Dear Daughter, You're very wise to start looking before you need it. My mom had my dad at home and didn't do that before things got to the breaking point and she had to do something. I would suggest you start with the services available on this web site (the link for Senior Living Directory at the top of the page), look in the yellow pages, use an online search engine (Google, Bing, whatever you prefer). Talk to friends and see if anyone has a similar situation or if they know someone who is and then talk to those folks about where they have their elder and what they like/dislike about the place. Also be sure to search online for reviews for places you're considering, check with your state's elder care/child care licensing and regulatory board and see if there are any complaints or comments about the facility. Once you've picked out several start visiting them. Go talk to the folks that run the place. Go there several times at different hours of the day. Talk to the care givers, the housekeeping staff, the maintenance man, the cook/chef. Talk to residents there. Talk to the residents' families when you see them. Look at the place. Is it clean? Are the residents clean? Are there any odors? (don't let anyone tell you that's a temporary problem unless you can tell it's just a soiled incontinence product!) Do the folks look happy? Do the employees look happy? Are the employees interacting well with the residents? Are the employees staying busy or just sitting around? (I guess you can tell I've done this a time or two....) By the time you have to move your mom she probably won't be mad about it - my dad wasn't. He was actually happy to have people waiting on him (that was the problem - mom got to where she couldn't and didn't have 7X24 help in the house). Let me know if I can try to answer questions for you about what we've learned having dad in assisted living. Hugs and good luck! Frances
Great information, Frances. My Dad isn't ready, but I need to start looking now.
You're very welcome. Good luck with your search, and let me know if I can help in any way.
Thank you very much.
Thank you Frances for the information. It is appreciated very much. Since my father was a veteran, I was advised to look into benefits from the VA. Hope that helps - supposed to be a long process to get approved, but will be worth it in the end if we get assistance.
I drive by two probable facilities often, telling Patti that "we" might have to go there if we get too sick to stay home. She has not shown any preference.
One thing I just remembered hearing (and I do hope I have this correct but if anyone has better info please let me know): If Medicare pays for a facility for your loved one any assets that remain when that person passes on will be pursued by Medicare to cover the cost of care. In that case a will would basically be worthless. And more and more you cannot transfer the assets from that person less than 5-7 years before institutionalization. I believe they refer to that as the "look back" period for determining what to go after. My apologies if this frightens anyone, but it is a reality and can be a big surprise if it comes.
Frances, I just came back from a seminar where the lawyer who presented said pretty much the same thing. One other thing he said is that, in Oregon, you can transfer the funds before so that the when the patient dies the survivor has ownership and when the surviving spouse dies, Medicaid then goes after what is left to the balance of monies spent. The transfer time is about 5.5 years right now. I don't know if it is different per state. Contact an elder law attorney. DeAnna
Thanks DeAnna. I thought that's what I remembered. I think there are articles on this site that discuss this.
Frances and DeSings offer good financial advice. I am struggling with the problem. No Washington State attorney has been much help. My assets are in California, accumulated before our present marriage.
If I am correct, in Michigan, if you "hide"/transfer your funds away from the patient, you can only do that AFTER they enter a NURSING facility, not a dementia unit (which are usually licensed as an Adult Foster Care home). I have also heard that MEDICAID can go after your assets (such as the home if it is sold after the patient passes away). Do you really want to hold onto the home for who knows how many years while the person is in a home? Personal choice. Also, the transferring of funds basically only works well if there is a surviving spouse, but there are a few things you can do if you are widowed.
It's been a bad week. Need to find a home sooner than planned, I believe!
Favorite (only) Daughter, Thank you for posting your question - and thanks to everyone for all of the great advice! If you haven't done so already, consider searching for an assisted living facility through the Caring.com Senior Care Directory: www.caring.com/local/assisted-living. I hope this information is helpful to you as your search for a care provider for your mother. Please contact us if you need any assistance! Kind regards from the Caring.com Community Team
Caregiving Tips: How Do You Blow Off Steam?
Branching off from another conversation: How do you blow off steam, vent frustration, etc., without taking it out on someone else or doing anything reckless? I tried the primal scream a couple of times and all I got was a sore throat. Isolation helps me calm down, but it's usually the lack of solitude that gets me frustrated in the first place. Any suggestions? Lynne.
wishing u well, lynn. i love to just go for a drive and crank up the radio to heavy metal, of course you may have a different preferance in music. and a mc flurrie, just sit in my van by the water, loud music and icecream
......and it helps the sore throat from the primal screamming,lol
Now that mc flurrie sounds nice but I think I would prefer quieter music myself:-)
a nice hot bath with your favorite music in the background - with or without candles....that's my r&r! Gotta run - time for the bossies!!
Hey Maxilyn, when our 7 kids were making me cuckoo, I'd go into a closet, shut the door and open my mouth really wide and SILENTLY scream! It was weird but worked! I still do it once in a while if I can't put my IPOD on to some country western music (only the happy stuff) and take a quick walk around the block. Good luck. I do like the MCFlurrie and the bath idea tho..
oh that's EASY - I take my clean clothes from my drawers etc. and throw them around and scream and rant and throw more and scream and rant more (everything that upsets me and my deepest fears are vocalized) and then when the drawers are empty and the room is decorated in everything from my unmentionables to my jeans I sit and cry as I fold an put them away, it is very cathartic.
Wow, some great ideas here!
MJAngel- so where does the pole dancing fit in??? hee, hee.....
that would be nice too,or get a book and start reading w/ the radio on to light,soothing music.screaming will just give you a sore throat and that again will be another problem.think that it will soon disappear....try reading the Bible,The Psalms specially for enlightenment. take care and God bless :)
I don't dance angry! I've missed it a lot this month, got a thing with a nerve in my neck going on. I will be going back to workout tomorrow as the PT didn't help at all and I feel worse for not exercising like usual. I will see a specialist soon enough...
take care of yourself, MJangel!! ♥
Well Max the primal scream to be totally effective is to be done half naked and hanging from a tree!!! and I have had a kneck pain too like a pinched nerve, but for some odd reason it just went away, I'am totally serious it's gone.
I agree that reading the Psalms would be a good stress reducer for a stressed out caregiver. I read them to Mom often too. Thanks for that tip, anonymous!
YOU'RE WELCOME...HOPE IT HELPS. GOD BLESS.
Oh, Hopen, you're a stress reliever all by yourself. ROFL. I just might have tried that except both rotator cuffs are shot. Wouldn't DH have had a fit?!
Yes, reading Scripture and/or prayer always calm me down if I can find a few quiet moments. Right now DH is asleep in his recliner and DD has yet to get up. She always was a night owl; now it's a way to avoid interacting with her father. So I will put some bubble bath in the tub, find some very sweet, blue jazz on the radio (none of this experimental cacaphony), and soak. Good night, Angels, and thanks.
Caregivng Humor: A Funny Moment Worth Sharing
Sometimes DH can be sooooo funny! :) He happen to overhere the weather man say the temp was to drop 10% tonight. It was 71% today and is to go down to 59 or 60%. So he went and put his coat, hat and gloves on! Said it was cold in here and he was freezing! I asked him to tell me what the themomiter said. He said 71%.......!
Funny. WMMB's Pete will get her rain boots and oar when it rains for fear of flood.
Too cute!
My Mom just decides that she isn't going to go out.
Ya gotta love them, don't ya.
We get a lot of confusion like that on the evening news too. It's a whole new world out there.
Wayne & I went to meet youngest daughter (27) to look at wedding dresses. Just got engaged about two weeks ago. We were ready to go out the door when I looked at Wayne's feet. He had one tan dress sock and one brown dress shoe on one foot. And he had one white low cut tennis sock and one of his brown plaid slippers on the other. Tee, hee, hee!! Christina would have been mortified (she's the fashion police of the family). LOL!! Perhaps I should have left them. Made it more memorable for her. Ha, ha, hah!!
I've given up on matching anything. All Mom's shoes have the same heel hight (flat) because she has enough problems tipping over. Oh, and they have to be the correct foot because she keeps her left shoes in one closet and her right shoes in another. Pick your battles right? She has this god awful aztec sweater coat that she wears all the time. I wish it would snow so I could get rid of it. I feel better now. Thanks for the early AM vent.
Gillian, CM...I found the top of a tissue box inside of my mom's left shoe the other day. Why was it there, you may ask? She said she had it in there to support her foot and to stop it from hurting...I know, go figure. Our folks are a hoot!!
Today was about to start as normal until my dear Margaret told me her departed Mam had brought her a cup of tea at 2 A.M ( which is when she woke me from my dose , I don't really sleep anymore )..She was more eager than normal to go for a walk around the shopping Mall with all the other " keep fit "...folks,. Or walks have become shuffles now,,,but today, she had an even tougher time getting out of the car and so with my help we got the show on the road. She was really incapable,almost like a drunk with slurred speech and tottering walk,,,so we cut the whole thing short and I think the walking lark is now finished.Arriving home, straight to bed once again,,,I would say 10 hours per night and 5 hours per day are now the norm..Sorry about this rant,,,I had to tell someone...love you all....P>G
I think we all have encountered struggles with our loved one's mobility impairments at some point. Don't worry about "ranting"; this is the place for it. Those one-winged angels will wrap their wings around you and comfort you. I hope that you can get some needed rest soon. God bless.
ThanksTraceyJ ...I needed that, I know deep down that the end is near and have been told so by the Docs etc,,,but it's still hard to accept and still see Margaret attempting to do the things that were a breeze only a short time ago ,,,Will take things as they come and enjoy the time we have together, struggle or no struggle,,,Got to love this site,,,Pink Gin
hugs to you and Margaret, PG!! ♥
Rant away everyone! Lord knows we need it. I've noticed some changes in Wayne of late too, Pink Gin. Even our friends and family have mentioned them to me. Nice to know it's not my imagination, but sad to know that advanced/end stage is nearing. There are times when I honestly feel panicky about it! Thank goodness it doesn't happen very often. I know 2012 will bring some changes I don't want to face, but will have pull up my boot straps and handle them. Hugs to you and your dear wife, PG! She's lucky to have you, darlin'!..........Gillian♥♥
I think I'm done with the panicky stuff now and just hang around in a numb stupor...It's been an eventful day with my better half collapsing once more ( plays havoc with my shoulder, having to catch her ),,I have been told now that the end is very near and know that deep down, it is,,,but Margaret seems to keep giving me a laugh ( unintentional though I think )..This morning, she came into the room with her head and one arm in the neck hole of her top,,,what a sight, asked her if she was taking up stripping,,,,got the most awful blank stare but a very nice eye twinkle...love you all....PinkGin
Awwwwwww! That's entirely too cute, PG! Love you back.......Gillian♥♥
God bless you, PG!!
Thanks all for my being able to be in touch,,,,Just off to the Docs now , for myself this time as Margaret's nurse checked my blood pressure and it was dangerously high,,,,so watch that dear cares, sometimes we forget our own health issues, I was going to arrange a sitter for Margaret but she insists on going with me ( She thinks she is taking care of me )...Love and blessings to all you angels...PINK GIN
This cannot be stressed enough, PG - caregivers need to take care of themselves, first - then their loved ones! Hope all turns out fine at the Dr.'s!! ♥
Dementia Symptoms: Does Seasonal Affective Disorder Influence Dementia Traits?
Has anyone had any experience with Seasonal Affective Disorder and how if affects dementia patients. Apparently it has to do with not getting enough natural light during the winter months which in turn throws the mind out of whack even more tha it already is. apparently allowing the individual to be exposed to 30 minutes a day of of a specific color range of light will resolve the issue. Curious to learn what the overall effect is with dementia patients if anyone has had any experience.
Maybe it's like cabin fever!! Only worse with a dementia pt. The darkness of winter is overwhelming for them. Plus they can't get out as much. I'm sure pts down south must fair much better with this because they get so much more sun. I know my mom doesn't like being cooped up in the house all winter.
When the sun started going down this winter by 4:30 every day, (we live in the South, New Orleans) mom started getting agitated in the evenings. Usually by 3:30 she starts asking what time of day it is and that means it is time to offer food. Then we turn lights on in the living room as the darkness comes on. I found mom couldn't tell whether it was day or night whether we opened windows and curtains or not. She was sundowning for the past 3 months. The last day I had her out in the daytime to visit the doctors office, she didn't fair so well. But then, she was fighting CHF and the beginnings of a UTI.
My husband does not do well with the time change or winter.He gets very confused and alot of sundouning .I do find if I get him to walk outside despite the cold it helps .I think sun helps us all and getting out .But the season or any change affects our love ones more just what we have experienced
We thought lack of daylight was causing agitation. We got a sunlight lamp, but it has not helped. Even on the dimmest setting, Patti finds it annoying in the early evenings. She prefers low watt light coming from the bathroom and a simple nightlight under her bedstand. She is not taking any sleep or depression medications now, which I think makes her more alert and cheery when she is awake.
Am wondering if the dark days also makes sundowning more of a problem.
This all sounds like what I experienced with mom from last winter. The weather was so horrible that it was difficult to take her outside. My biggest fear was her falling and hurting herself even though I hold her hand [like a child] when we're in parking lots or going into a store. I noticed that she was much better this summer because I was able to get her out more.
JuJuB, in my case, the dark days definitely creates a more intense bout of sundowing and shadowing. There are evenings when she even follows me to the bathroom, or just everywhere I go.
I also meant to mention that I left our little white Christmas tree up on the dining room table. It has a soothing affect on mom, she stands at the table and just stares at it. It's decorated with white, gold and silver ornaments with the white lights, and a white blanket beneath. Now that the days are starting to get longer, I'm going to leave it up through the end of January and hopefully she will still be calm when it's gone. She still has no idea that Christmas has passed or that we had New Years.
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